Saturday, July 18, 2009

Connie went to the eye doctor yesterday morning and afternoon. Did he go twice, you ask? The answer is no, but his appointment was in the morning and we didn't leave there until the middle of the afternoon! We originally had an appt. for back in June, but Connie was inpatient at Children's then and we had to reschedule. The closest appt. time they could give us was for a month later, which we took. Our appt. was for 11:00 am. By 12:15, we still hadn't even been called back. Finally, we got called back around 12:30. We were back there for five minutes (at most) and the optometrist dilated his eyes and sent us back to the waiting room (which was overcrowded and had no seats available except on the floor). We went for a walk down the halls and came back in. About 40 minutes later, they called us back again and the same guy looked at Connie's eyes. After five more minutes of looking at his eyes, they sent us back out to the waiting room until the doctor was ready to see us. At 1:42 they called us back into the room where we waited until 2:00pm to be seen by the doctor. He came in and said that Connie's eyes are worse in relation to the far sightedness. Since he's non-compliant, meaning he isn't cooperating wearing the glasses, he's letting us go another six months without them. If, at that time, they are still getting worse or are not better, then he will need surgery to correct the far sightedness. It is laser surgery and is the same thing adults get (lasik). I asked if he was comfortable doing this on a cardiac patient and he said he's only under anesthesia for 20 minutes for this procedure. So, we'll see what happens when the time comes. The thought of surgery makes me a bit nervous, but it does seem better than a lifetime of glasses.

Thursday, July 16, 2009

So, tonight at dinner, Connie was standing on the back of the restaurant high chair and it tipped backward and cracked him in the mouth. It cut the little skin between his gums and upper lip. We were worried it wouldn't stop bleeding with him being on Coumadin. Luckily, it did stop bleeding and he didn't seem terribly upset about it or act like it was hurting him so we dismissed it. A couple hours later, it occurred to me that he had a cut in his mouth and there might be a risk of bacteria entering the bloodstream which might lead to endocarditis (infection in the heart). I know when he goes to the dentist, he'll have to take antibiotics ahead of time to prevent this and so I called the doctor to see if he needed to be put on something in this case. Dr. Bromberg said that studies actually show that the bacteria that enters the blood stream during dental procedures leaves the body within 45 minutes, which is why the drugs need to be on board ahead of time. So, by the time I called, any bacteria would have already left his body, meaning there is no need for an antibiotic AFTER a cut in the mouth. He jokingly said that the thing to do next time is to put him on antibiotics BEFORE he hurts himself (ha ha). We do keep it interesting though, huh??

Ella has been rescheduled for her double switch on Friday, July 31. Please plan to join us again in prayer.

Wednesday, July 15, 2009

Our little L-TGAer who was to undergo her double switch with Dr. Bove today ended up having her surgery canceled moments before they took her back to the OR. Her parents already had their gowns on and everything to carry her in. An emergency case came in that required ECMO (longer term bypass) and it was the last ECMO unit in the hospital. Dr. Bove did not feel comfortable doing the operation without having one of those units as a backup in case her little body needed it after the surgery. So, now her parents will have to ride the emotional roller coaster a little longer. As rough as it is to be delayed, I'm sure they are relieved that she was not that emergency case. That kind of helps to put it in perspective.

I'll update to let you know when they get a new date for surgery. Dr. Bove was going to try to move some things around in his schedule to try to get them in in about two weeks.

To update a bit on Connie, he's had four nights now of "tough love" where we've been letting him cry and when he wakes up at night we've not been going in. So far, so good. He's down to crying for less than 10 minutes and only waking up once or twice and turning his music back on and going back to sleep on his own. It's such a relief! Now if we can just get him to stop demanding Cheez-its for every meal or snack we'll be getting somewhere!

Tuesday, July 14, 2009

So the All Star Game returned to St. Louis and, although we had no tickets, we didn't want to completely miss out on the festivities. After lunch with Great Grandma O'Leary and a short visit, I headed downtown with the kids and the double stroller ready to take on the crowds and fun. We found a meter close by and only had to walk three blocks. We found a second row spot to camp out in and watch the parade. Unfortunately, neither of the kids is old enough yet to really understand or get into the excitement of the event. Mookie was looking forward to a parade and she assumed (as did I) that it would at least be of the caliber of the O'Fallon 4th of July parades that she has become accustomed to year after year. She was disappointed when not one single sugary bit of sustenance came flying at her or anyone else for that matter. And by the time the parade participants got to our end of the route, there were few souvenirs left to be thrown. A 12 year old girl in front of us caught a little soft logo ball that was thrown and gave it to Mary Kathleen. Mary Kathleen sat on my shoulders and Connie spent most of the time playing with the iPod in the stroller! Both of them fell asleep a little more than halfway through the parade. On our way back to the car, we ran into Aunt Barb and her gang of kids and grand kids. We chatted with them for a minute and then headed on back home. After I got everyone safely packed in the car and navigated my way (without a GPS) back to Hwy 70, I honestly felt like Superwoman or something; like I could take on the world!! I don't even like going to the grocery store with both of them so I was shocked that taking them to this wasn't a complete disaster! The camera ran out of battery before the current all-stars even drove by, but I managed to get a few pics. Enjoy!The Wizard and Bruce SutterIs it naptime yet?Mookie with her one and only souvenir (courtesy of another fan)Pittsburgh's mascot

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.